Ray’s Blog

Well, I feel much different today. More like crap than not. My symptoms are increasing in severity and some new ones are cropping up. My feet feel like they are asleep all the time making it difficult to walk. My hair is still coming out. I might need to shave and wear a hat. I’m having nose bleeds and I was super sensitive to the cold and rain today but then it was really cold, about 39 when I was released. I saw my primary physician today and he agreed that we still need to watch for spasms as the chemo accumulates in my body but we will respond reactively instead of proactively meaning if I have a spasm, then they will up my meds. Which is probably OK because if I do have another spasm now, it should be manageable and not severe like previous ones. The accumulation is gradual so it should be fine. I just took an ativan to help me sleep, to put myself out of my misery. So probably won’t be saying much more. Will try to work tomorrow. The bad days seem to be Thursday after disconnect, which will be 1:30 for me, and Friday is the worst. I’ll keep you updated. Maybe I can just dance the side effects away. We wish you nothing but: LOVE, PEACE AND SOUL! It’s the SOOOOOOOOOOOOUUUUL TRAIN!

Tomorrow is my last day of feeling good before the next chemo treatment. I know I should be thankful that this therapy may be saving my life and I am but, at the same time, I dread it because of how it makes me feel, not to mention the constant fear I’m in because the spasms could always return. But I am looking forward to Monday. Monday will be the day I almost feel like I don’t have cancer. And it will probably be the day I feel my best until after I finish my treatments sometime in March. Meaning, it’s only downhill from here. The more they hit me with chemo, the worse I’m going to feel. Again, I’m extremely grateful, I just wish there were an easier way.

Surprise! I bought a Ziggy tennis glass on eBay. We needed one of our own.

Yesterday was a bad day for me. I spent most of it curled up in a ball in my bed. No energy. I can’t really explain it. Fatigue is a well-known side-effect of chemotherapy but it didn’t hit me until yesterday. The day before when I completed my treatment, I didn’t feel fatigued. I certainly haven’t been performing any great physical feats that would make me fatigued, yet I was. The night before I was restless, couldn’t get comfortable, and was agitated. I kept getting up to pee and couldn’t get uninterrupted sleep. Reminded me of the hospital. So last night to help me sleep I took half a vicodin I had left over from the first spasm - I never did take any of those. more…

Today I successfully completed my first chemotherapy session at home! And by successful I mean finished the pump without disconnecting it and not having any but normal side effects. I’m still not completely out of the woods yet as the 5-FU is still floating around my body but I’m hoping after a good night’s rest, I’ll be alright. I’m not really feeling so well right now. Not terrible but just feeling sick. Again, all of this is still unknown for me. I have no idea how I will be feeling tomorrow or in a few days. And I still carry around my nitroglycerin tablets just in case. Who knows what side effect will hit me and when. more…

I have not had spasm this session. I was completely expecting at around midnight last night that I would be having a spasm and a very severe one - not something I was looking forward to. After sending the kids to bed early Christina and I camped out in the living room to wait it out. We tried not to look at the clock and I tried to distract myself with the internet while Christina worked and watched TV. One of the obsessions I nourished was my new found love of Regina Spektor - WOW! I wasn’t so surprised that I liked her once I found out that she is originally from Russia and spent the second half of her childhood in Riverdale, BX. She’s one of the few artists I actually care to listen to their lyrics. She’s quirky, funny, emotional, raw, poetic, irreverent, playful, and incredibly talented. A good introduction is this interview with Regina on CBS’s Sunday Morning. I must have watched between twenty to thirty videos before I needed to change and we still hadn’t hit midnight. more…

Yesterday after gloating about how good I was feeling, I had very bad lower back pain during a bowel movement and I was not constipated so stop thinking that. Everything during chemotherapy is strange. The feeling seemed to consume me at one point and even went to my head. So that was bizarre. Never had that before. Only after chemo. Then it happened again later in the evening though not as bad. I found some information about it and it does seem as though this can happen but no doctor warned me about it. I’ll have to ask someone about it. This is just another example of the weirdness that is chemo. You never know what any given day may bring.

Yesterday, at 2:30 am, miraculously, I completed my first chemo treatment. It took a four-day, three-night stay under constant observation at the hospital to do it, but I did it. And not only that but I completed the appropriate, standard treatment. We did not have to deviate from the master plan. There are a few differences now though, the main one being additional medications to dilate my blood vessels which are controlling, but not eliminating, my vasospasms. This is the trade-off. In order to get through the treatment, I have to endure additional pain. The hope is subsequent treatments will be better than this time, but we may not be able to eliminate the vasospasms completely. more…

Today was my first full day back at the office. My first attempt yesterday was interrupted with medical appointments as will tomorrow, but today was a complete day back, my first in over seven weeks. My car has been sitting silently all that time and had to be jump started to get me there. As I was driving I could hear a grinding every time the wheels came back around to the place they had been sitting - that’s how long it’s been. more…

I was finally able to speak with my oncologist today. He hadn’t been told what had happened to me until Friday and then he was rounding at the hospital and couldn’t call me. The next time he isn’t there when I have some other emergency, I will insist they get him on the phone. So days of worry and speculation are not quite over but we’re felling much better. It’s alright if I have the first complete chemo treatment at eight weeks and hopefully that will be the case. And the incomplete treatment I had wasn’t worthless. We still don’t know what happened to me or what we will do to change the outcome but Sloan-Kettering will weigh in and Wednesday we’ll come to some conclusion. Anything we chose to do though no matter how sure we are about what happened will be like trial and error. I’m going to push to be observed (which may mean hospitalized) so if something happens again we’re more prepared to find out what it is, because, I do expect it will happen again. Just like everything with this cancer so far, only time will tell.

Some of what I felt during my first session of chemotherapy:

• Sensitivity to cold in my mouth
• phlegm and coughing while at infusion room (maybe from lunch but exaggerated)
• pain in jaw when chewing at first
• momentary pain in sides when I got up from treatment
• tingling in fingers
• muscle spasms in hands
• Feeling physically and mentally strong from steroids
• post nasal drip
• sneezing
• hungry